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Does anyone in here take opiates for their fibro? I get wicked bad side effects from basically every oral medication I've ever taken so I got my doc to prescribe me the 12mcg/hr fentanyl patch (kind of on a trial basis - I was taking Norco (hydrocodone/apap 10/325) but it gives me a headache and the acetaminophen in it makes my tummy hurt). I guess I'm just wondering if anyone here has experience with the Duragesic patch or has actually found a painkiller that works.

For those of you who are going to tell me there are other things out there, I have had chronic pain since I was at least 10 years old and I am 23 now. I have tried just about everything that is non-narcotic and it either hasn't worked (hell, even the majority of the narcotics I've tried haven't worked) or has had terrible side effects to the point where I can't use them any more.

I've tried to get into pain rehab places but the most recent one told me that if I didn't do their pool therapy, I couldn't participate in the program and I have serious pain issues with water touching my skin. Previously, the Mayo Clinic (a 3 hour drive from my house) told me I had "chronic pain syndrome" and recommended I do their 3-week long program that requires you to pay for lodging and food and I'm already on state financial aid, food stamps, medical assistance, and had a part-time job so I couldn't do it.

Anyway, this is getting wicked long and ranty, I mostly want to know if any opiates have actually helped any of you. Right now, I am jobless and having the worst flare-up I have ever imagined so I am really in need of some help (of course the fact that it's -11 degrees outside isn't helping at all)

Thanks!

Thanks for your Reply!

17 Replies |Watch This Discussion | Report This| Share this:Opiates, anyone?Does anyone in here take opiates for their fibro? I get wicked bad side effects from basically every oral medication I've ever taken so I got my doc to prescribe me the 12mcg/hr fentanyl patch (kind of on a trial basis - I was taking Norco (hydrocodone/apap 10/325) but it gives me a headache and the acetaminophen in it makes my tummy hurt). I guess I'm just wondering if anyone here has experience with the Duragesic patch or has actually found a painkiller that works.

For those of you who are going to tell me there are other things out there, I have had chronic pain since I was at least 10 years old and I am 23 now. I have tried just about everything that is non-narcotic and it either hasn't worked (hell, even the majority of the narcotics I've tried haven't worked) or has had terrible side effects to the point where I can't use them any more.

I've tried to get into pain rehab places but the most recent one told me that if I didn't do their pool therapy, I couldn't participate in the program and I have serious pain issues with water touching my skin. Previously, the Mayo Clinic (a 3 hour drive from my house) told me I had "chronic pain syndrome" and recommended I do their 3-week long program that requires you to pay for lodging and food and I'm already on state financial aid, food stamps, medical assistance, and had a part-time job so I couldn't do it.

Anyway, this is getting wicked long and ranty, I mostly want to know if any opiates have actually helped any of you. Right now, I am jobless and having the worst flare-up I have ever imagined so I am really in need of some help (of course the fact that it's -11 degrees outside isn't helping at all)

I am sorry ur having such difficulty...as many of us have had tryin to decide whats best for us n ours..

think if find the right pain med u might like water therapy i sure do.. I have had 37 year practice learning to cope n dope... Had many bad experiences..but keep an open mind..

There is a right combination out there....Ive been where you are a few times over n know its no funn looking for the silver lining out there..

glad u joined us here...I take celebrex(6 arthritses) and hydrocodone n zanaflex,,as my main cocktail.

my kids like tramedol..with alot less side effects...keeping them sharp to work or study...Plz feel at home here n look around open threads none set to private..... join in again, ask away vent..n read read read b/c knowledge is power...we share everything u can imagine here...hope u fin some helpful tips.

pain on skin...reminds me more of other than FM like MS or Lupis or chronic myofacial pain....alot of times we get misdiagnosed thus miss medicated too...Just a guess..n a thought or two for you to research n see if there is maybe additional tools needed for you n yours.
real sorry about the winter flare...hope it helps to know ur not alone...UGH its a loverly 9 here now tooo!YUCKY

I am sorry ur having such difficulty...as many of us have had tryin to decide whats best for us n ours..

think if find the right pain med u might like water therapy i sure do.. I have had 37 year practice learning to cope n dope... Had many bad experiences..but keep an open mind..

There is a right combination out there....Ive been where you are a few times over n know its no funn looking for the silver lining out there..

glad u joined us here...I take celebrex(6 arthritses) and hydrocodone n zanaflex,,as my main cocktail.

my kids like tramedol..with alot less side effects...keeping them sharp to work or study...Plz feel at home here n look around open threads none set to private..... join in again, ask away vent..n read read read b/c knowledge is power...we share everything u can imagine here...hope u fin some helpful tips.

pain on skin...reminds me more of other than FM like MS or Lupis or chronic myofacial pain....alot of times we get misdiagnosed thus miss medicated too...Just a guess..n a thought or two for you to research n see if there is maybe additional tools needed for you n yours.
real sorry about the winter flare...hope it helps to know ur not alone...UGH its a loverly 9 here now tooo!YUCKY

I have gone through their pain rehab program and it was great. It was amazing to see the difference between new people coming into the program and those leaving. Its a revolving program, so not everyone starts at the same time. Which is good because those that are ready to leave the program help out those new. Also, it gives the new people something to shoot for.
I knew a person during our session that was on medical assistance and they paid for it. They also reimbursed mileage. Rochester is built around the Mayo Clinic so there are tons of hotels, restaurants (many of them very affordable and many have delivery). All the hotels have free shuttles to and from the Mayo. Most insurance will cover this type of program if you explain the long term cost. Would they rather you be running to physical rehab every week and buying tons of expensive pain medicine or have one large upfront cost and that's it? My insurance at the time (Blue Cross MN) didn't have a problem with it at all and highly suggested it and paid for it.

I haven't had any pain medicine in the year since I went through the program. Not even a Tylenol or Advil.
I do take medicine to help me be more alert and focused during the day, but no pain medicine.

Also, as for opiates, they are great for acute pain (like a surgery or something) but are terrible for chronic pain (like fibro). They actually have proven that long term opiate use actually cause you to be more sensitive to pain. Also coupled with the high risk of dependency, I wouldn't recommend them for fibro.
I saw many people come in very addicted to pain medicine, but left completely free of it.

Again, I highly recommend the program.

Also, I can relate to the cold. No matter how long I live in MN, I don't think I'll ever get used to it.
I was born in California and spend alot of my childhood in Florida (my dad was in the Navy), but I've been living in Minnesota for 30 years and it still is a shock every year.

I have gone through their pain rehab program and it was great. It was amazing to see the difference between new people coming into the program and those leaving. Its a revolving program, so not everyone starts at the same time. Which is good because those that are ready to leave the program help out those new. Also, it gives the new people something to shoot for.
I knew a person during our session that was on medical assistance and they paid for it. They also reimbursed mileage. Rochester is built around the Mayo Clinic so there are tons of hotels, restaurants (many of them very affordable and many have delivery). All the hotels have free shuttles to and from the Mayo. Most insurance will cover this type of program if you explain the long term cost. Would they rather you be running to physical rehab every week and buying tons of expensive pain medicine or have one large upfront cost and that's it? My insurance at the time (Blue Cross MN) didn't have a problem with it at all and highly suggested it and paid for it.

I haven't had any pain medicine in the year since I went through the program. Not even a Tylenol or Advil.
I do take medicine to help me be more alert and focused during the day, but no pain medicine.

Also, as for opiates, they are great for acute pain (like a surgery or something) but are terrible for chronic pain (like fibro). They actually have proven that long term opiate use actually cause you to be more sensitive to pain. Also coupled with the high risk of dependency, I wouldn't recommend them for fibro.
I saw many people come in very addicted to pain medicine, but left completely free of it.

Again, I highly recommend the program.

Also, I can relate to the cold. No matter how long I live in MN, I don't think I'll ever get used to it.
I was born in California and spend alot of my childhood in Florida (my dad was in the Navy), but I've been living in Minnesota for 30 years and it still is a shock every year.

jenny380420 responded:

be careful with those patches....my friend gave me one during a flareup. After about 30 minutes my arm felt more painful so I checked the side effects... those things can kill you unless u have an opiate tolernace! amoung other serious side effects.

The combination is differant for everyone i think.

My dr just started me on paxil, and flexeral and naproxen. These are temporary until I can get some state aid and afford drugs that are more tailored for fibro like lyrica or cymbalta.

Are you taking anything for depression? I imagine your pretty depressed having been in pain all that time. Also depression meds help your body create more natural pain relievers. By no means am I trying to say "go take some depression meds and that will cure everything", i'm more just thinking it might help in addition to what your taking for pain.

Alot of the hydroco meds upset my stomach to. Have you tried cutting the pills in half? Like if I had an RX that was 1 pill every 6 hrs, i would cut the pill in half and take half every three hours with food
or a glass of milk, that always helped me.

i'm knew here i'm sure others will come along with better ideas.

very gentle hugs, jenny

Thanks for your Reply!

Report This| Share this:Opiates, anyone?be careful with those patches....my friend gave me one during a flareup. After about 30 minutes my arm felt more painful so I checked the side effects... those things can kill you unless u have an opiate tolernace! amoung other serious side effects.

The combination is differant for everyone i think.

My dr just started me on paxil, and flexeral and naproxen. These are temporary until I can get some state aid and afford drugs that are more tailored for fibro like lyrica or cymbalta.

Are you taking anything for depression? I imagine your pretty depressed having been in pain all that time. Also depression meds help your body create more natural pain relievers. By no means am I trying to say "go take some depression meds and that will cure everything", i'm more just thinking it might help in addition to what your taking for pain.

Alot of the hydroco meds upset my stomach to. Have you tried cutting the pills in half? Like if I had an RX that was 1 pill every 6 hrs, i would cut the pill in half and take half every three hours with food
or a glass of milk, that always helped me.

i'm knew here i'm sure others will come along with better ideas.

very gentle hugs, jenny

fibroinsd responded:

I am so sorry for all your pain. Sounds like you have really had it rough. My heart goes out to you. I wish I could give you some advice, but unfortunately, I haven't had experience with those drugs, so I will send to you some very gentle hugs and wishes for you to find the help you need.

I think the only advice I could give you, and I know this is difficult to hear, but would be to get into the Mayo Clinic. Call them again and find out about financial aide, or medicare paying for it. I am sure that if you were there, the doctors would work with you.

I am very concerned for you, because of you saying that the water gives you pain. I know I have been through this with my son. It is so difficult, but you need to find help. If it isn't the Mayo Clinic, call you local County Mental Health and ask for help. I know you are thinking that I don't know what I am talking about, and I don't know you, but I can hear the pain and problems in your writing and my heart breaks for you. Please, please, let down the wall of protection that you have put up and call someone that can help you. And don't say no one can help. I am sure you know people that want to help. Please call them and ask them to help you.

Sending you love and very gentle hugs.
Cece

Thanks for your Reply!

Report This| Share this:Opiates, anyone?I am so sorry for all your pain. Sounds like you have really had it rough. My heart goes out to you. I wish I could give you some advice, but unfortunately, I haven't had experience with those drugs, so I will send to you some very gentle hugs and wishes for you to find the help you need.

I think the only advice I could give you, and I know this is difficult to hear, but would be to get into the Mayo Clinic. Call them again and find out about financial aide, or medicare paying for it. I am sure that if you were there, the doctors would work with you.

I am very concerned for you, because of you saying that the water gives you pain. I know I have been through this with my son. It is so difficult, but you need to find help. If it isn't the Mayo Clinic, call you local County Mental Health and ask for help. I know you are thinking that I don't know what I am talking about, and I don't know you, but I can hear the pain and problems in your writing and my heart breaks for you. Please, please, let down the wall of protection that you have put up and call someone that can help you. And don't say no one can help. I am sure you know people that want to help. Please call them and ask them to help you.

Sending you love and very gentle hugs.
Cece

msnova74 responded:

Hello,

I have taken various narcotics at various times. I believe each of us needs to to exactly what we need to do.

I have used the fentanyl patch some years ago. It worked well. I just was allergic to the adhesive :}

Currently I am on lortab to the bad days and tramadol for the good ones.

Trust me they are days that if eating dirt would ease my pain, I'd do it.

I have taken various narcotics at various times. I believe each of us needs to to exactly what we need to do.

I have used the fentanyl patch some years ago. It worked well. I just was allergic to the adhesive :}

Currently I am on lortab to the bad days and tramadol for the good ones.

Trust me they are days that if eating dirt would ease my pain, I'd do it.

T

UppityCracker responded:

The coverage for the program was 100%, but right now, I am existing on $208 per month cash assistance and $175 per month in food stamps and have $300 in my checking account (and have no family in MN). I researched a lot of the stuff but it was unfortunately still too expensive with my budget.

I'm also diagnosed with chronic migraines, general anxiety disorder, and bipolar disorder, so none of those help me deal with the pain from the fibromyalgia with other medications (Lyrica made me manic [and made me gain 30 pounds in 2 months, really good for my health>, a couple others have made me suicidal).

Actually, I've never even technically been diagnosed with fibro but my mom has it and I've got the majority of the symptoms (the problem being my trying to figure out whether the trigger points hurt or not - I don't think I process touch quite right).

Ugh, I hate the cold here, it's so windy! (and sorry if that's rambling and/or doesn't make any sense, my eyes are blurry right now and I can't really read what I'm typing (: )

Thanks for your Reply!

Report This| Share this:Opiates, anyone?The coverage for the program was 100%, but right now, I am existing on $208 per month cash assistance and $175 per month in food stamps and have $300 in my checking account (and have no family in MN). I researched a lot of the stuff but it was unfortunately still too expensive with my budget.

I'm also diagnosed with chronic migraines, general anxiety disorder, and bipolar disorder, so none of those help me deal with the pain from the fibromyalgia with other medications (Lyrica made me manic [and made me gain 30 pounds in 2 months, really good for my health>, a couple others have made me suicidal).

Actually, I've never even technically been diagnosed with fibro but my mom has it and I've got the majority of the symptoms (the problem being my trying to figure out whether the trigger points hurt or not - I don't think I process touch quite right).

Ugh, I hate the cold here, it's so windy! (and sorry if that's rambling and/or doesn't make any sense, my eyes are blurry right now and I can't really read what I'm typing (: )

fibroinsd responded:

I am very concerned for you...hope you were able to read my post below. I really recommend you call the mayo clinic and try to get in. I am sure they will work with you and when you get better through them, you will be able to do much more.

I am afraid of how you sound like you are self-medicating. I think you need to find some doctors that you can really work with.

cece

Thanks for your Reply!

Report This| Share this:Opiates, anyone?I am very concerned for you...hope you were able to read my post below. I really recommend you call the mayo clinic and try to get in. I am sure they will work with you and when you get better through them, you will be able to do much more.

I am afraid of how you sound like you are self-medicating. I think you need to find some doctors that you can really work with.

cece

UppityCracker responded:

lol, thanks for the gentle hugs, very appreciated.

I read the instructions and a LOT of information before I finally stuck the little guy on my arm but honestly, it just takes the edge off a bit. I was paranoid as hell about it at first though. I was probably more comfortable with the fentanyl because I've been given it after my ECT treatments.

I'm on Wellbutrin, Lamictal, Topamax, Xanax, and naproxin for a combination of the fibro, bipolar disorder, migraines, and anxiety already. I'm afraid to think what it would be like to be off them. I had started doing that with the hydro too though, it seems to work better that way anyway since it keeps a more steady stream of medication going through your system without throwing it all in there at once.

Just to let you know Lyrica made me gain 30 pounds in 2 months (but it also made me manic, so that may have been part of the problem) so if you do get it, watch out for that.

I read the instructions and a LOT of information before I finally stuck the little guy on my arm but honestly, it just takes the edge off a bit. I was paranoid as hell about it at first though. I was probably more comfortable with the fentanyl because I've been given it after my ECT treatments.

I'm on Wellbutrin, Lamictal, Topamax, Xanax, and naproxin for a combination of the fibro, bipolar disorder, migraines, and anxiety already. I'm afraid to think what it would be like to be off them. I had started doing that with the hydro too though, it seems to work better that way anyway since it keeps a more steady stream of medication going through your system without throwing it all in there at once.

Just to let you know Lyrica made me gain 30 pounds in 2 months (but it also made me manic, so that may have been part of the problem) so if you do get it, watch out for that.

NordicNINE responded:

I also agree. Call the Mayo.
You should be able to talk to their Social Services dept or possibly even the conceaires.
The should be able to find something for you.
Most hotels have microwave & fridges, so you could bring food or buy it there.
They have free shuttles that run to some of the stores (like Walmart) and the malls.
The only thing would be the hotel.
I'm sure medical assistance would pay for it, but they usually reimburse you after you go and present the receipt. If you're not able to pay it upfront and wait to get reimbursed, I'm sure your County Social Services, or the Mayo's Social Services should be able to help.

Thanks for your Reply!

Report This| Share this:Opiates, anyone?I also agree. Call the Mayo.
You should be able to talk to their Social Services dept or possibly even the conceaires.
The should be able to find something for you.
Most hotels have microwave & fridges, so you could bring food or buy it there.
They have free shuttles that run to some of the stores (like Walmart) and the malls.
The only thing would be the hotel.
I'm sure medical assistance would pay for it, but they usually reimburse you after you go and present the receipt. If you're not able to pay it upfront and wait to get reimbursed, I'm sure your County Social Services, or the Mayo's Social Services should be able to help.

kristinaNJ responded:

I am a newcomer to the site but wanted to let you know that a combo of tramadol and amitriptyline (an antidepressant) and working fairly well for my pain. The tramadol alone was nothing but when adding and uping the dosage of the amitriptyline I finally found some relief.

I was only diagnosed 3 years ago so haven't really tried to many different meds. Only problem is the side affects are not so great. The fatigue I fight everday is getting very difficult to deal with. Don't know if it is the illness or the drugs or most likely both.

Thanks for your Reply!

Report This| Share this:Opiates, anyone?I am a newcomer to the site but wanted to let you know that a combo of tramadol and amitriptyline (an antidepressant) and working fairly well for my pain. The tramadol alone was nothing but when adding and uping the dosage of the amitriptyline I finally found some relief.

I was only diagnosed 3 years ago so haven't really tried to many different meds. Only problem is the side affects are not so great. The fatigue I fight everday is getting very difficult to deal with. Don't know if it is the illness or the drugs or most likely both.

NordicNINE responded:

It's part of the disorder.
That's the only thing I take medicine for.
I can manage the pain.
It's not always fun, but I can deal with it.
But, the fatigue and "fogginess" I can't.
Not when I need my brain for work.
I take Provigil which has been great.

Thanks for your Reply!

Report This| Share this:Opiates, anyone?It's part of the disorder.
That's the only thing I take medicine for.
I can manage the pain.
It's not always fun, but I can deal with it.
But, the fatigue and "fogginess" I can't.
Not when I need my brain for work.
I take Provigil which has been great.

NordicNINE responded:

Oops. I do take Trazodone also at night to help me get to the deeper levels of sleep.
It really sounds like all or most people with Fibro have sleep issues.
They don't get to the deeper stages of sleep.
Many researchers and doctors seem to think that lack of sleep for years is what starts causing many of the other symptoms of Fibro.

Thanks for your Reply!

Report This| Share this:Opiates, anyone?Oops. I do take Trazodone also at night to help me get to the deeper levels of sleep.
It really sounds like all or most people with Fibro have sleep issues.
They don't get to the deeper stages of sleep.
Many researchers and doctors seem to think that lack of sleep for years is what starts causing many of the other symptoms of Fibro.

I have actually seen results from meds like Vicodin and Percocet. Also was on the Duragesic patch for awhile and that helped a bit too. The problem (IMO) is that docs are hesitant to prescribe opiates because "most" people don't respond to them in terms of pain relief from fibro. But, that is MOST. I have read articles that indicate opiates "should not be withheld" when other medications don't help. I truly do understand your pain and your search for relief - I'm also a fibro sufferer. After 10 years of it, I still have at least 1 flareup a week, and have some level of pain every single day. I, too, have tried literally dozens of meds, exercises, dietary changes, etc and have not found anything that really gets rid of the symptoms. All I can do is hope to manage it somewhat. But I can't hold a job anymore. I'm assuming you'd have a positive diagnosis for fibro that included a trigger, or pressure point test? I'd be interested in hearing back how you do on the fentanyl patch. Hope you can find some relief from this wicked disorder.

Thanks for your Reply!

Report This| Share this:Opiates, anyone?I have actually seen results from meds like Vicodin and Percocet. Also was on the Duragesic patch for awhile and that helped a bit too. The problem (IMO) is that docs are hesitant to prescribe opiates because "most" people don't respond to them in terms of pain relief from fibro. But, that is MOST. I have read articles that indicate opiates "should not be withheld" when other medications don't help. I truly do understand your pain and your search for relief - I'm also a fibro sufferer. After 10 years of it, I still have at least 1 flareup a week, and have some level of pain every single day. I, too, have tried literally dozens of meds, exercises, dietary changes, etc and have not found anything that really gets rid of the symptoms. All I can do is hope to manage it somewhat. But I can't hold a job anymore. I'm assuming you'd have a positive diagnosis for fibro that included a trigger, or pressure point test? I'd be interested in hearing back how you do on the fentanyl patch. Hope you can find some relief from this wicked disorder.

I am 70 now and have had this fibro for at least 25yrs The 2things that help as far as meds are the opiate Tramadol 3xa day and at night I take alyrica50mg. I do Tai Chi stretches and water aerobics When I get. Flare up Vicodan is my drug and hot shower or heating pad Good luck

Thanks for your Reply!

Report This| Share this:Opiates, anyone?I am 70 now and have had this fibro for at least 25yrs The 2things that help as far as meds are the opiate Tramadol 3xa day and at night I take alyrica50mg. I do Tai Chi stretches and water aerobics When I get. Flare up Vicodan is my drug and hot shower or heating pad Good luck

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